More education and community support are needed to help families dealing with Alzheimer’s disease, local panelists said Thursday during a wide-ranging discussion of dementia care.
Increasing awareness and reducing stigma will encourage early diagnosis. Catching dementia sooner rather than later allows doctors and caregivers to implement treatment plans that can shift the trajectory of the disease, enhancing quality of life and allowing patients to remain independent as long as possible, said Dr. Sabrina Everett, a clinical neuropsychologist who works with Penn Medicine Lancaster General Health’s Alzheimer’s treatment program and Memory Care Clinic.
She was one of four featured panelists in United Way of Lancaster County’s latest Conversation About OUR Community. March’s edition was a collaboration between United Way and the Greater Pennsylvania Chapter of the Alzheimer’s Assocation.
Clay Jacobs, the chapter’s executive director, moderated the discussion, which was preceded by a short presentation by community health educator Jessica Rodriguez.
A major and growing burden
An estimated 320,000 Pennsylvanians will be living with Alzheimer’s by 2025. The majority are cared for by family members: In 2021, an estimated 401,000 caregivers provided 642 million hours of care that, if compensated at just over $15 an hour, would work out to an eye-popping $10 billion.
Those numbers are only expected to increase as the population continues to age. In short, Alzheimer’s is a growing public health issue “that requires a robust response,” Jacobs said.
That response, he said, should include elements such as early detection and diagnosis; risk reduction; improving the health care workforce and mobilizing community partnerships.
One barrier to early detection: Lack of understanding of mild cognitive impairment, which is a common precursor to full-blown dementia. More than 80% of Americans know little or nothing about it, Rodriguez said.
There are also clear racial and ethnic disparities: Blacks are about twice as likely and Latinos are 1.5 times as likely as likely as Whites to develop Alzheimer’s disease, but they are less likely to receive a diagnosis, she said.
In part, that’s because of a greater cultural stigma around dementia, said Jacqueline Fisher, executive director of the Spanish American Civic Association.
Fisher described taking her mother to the doctor for testing after noticing her increased forgetfulness. Despite everything, when her dementia was confirmed, it was a shock, as it typically is for caregivers.
“I grieved the loss of my mother,” she said.
Lancaster Alzheimer’s Community Forum
A free community forum on dementia is planned later this month.
Hosted by the Greater Pennsylvania Chapter of the Alzheimer’s Association, it will take place from 2 to 4 p.m. Thursday, March 23, at the S. Dale High Leadership Center, 1861 William Penn Way, Lancaster.
The event is intended to connect people to resources available in Lancaster County and help build a robust local network for dealing with Alzheimer’s and other dementias.
The YMCA of the Roses is eager to be a partner and community resource for families dealing with Alzheimer’s, said Cori Strathmeyer, its director of healthy living. In partnership with the Alzheimer’s Association, it offers education sessions on dementia and brain health; the next series is on March 21.
It’s important for family members to be alert to the signs that their loved one has a problem, and that they may need a higher level of care, said Tom Martin, executive director of Lancaster County Office of Aging. In particular, they should keep an eye out for unsafe behavior such as leaving the stove on or piling clutter on a hot radiator.
Meals on Wheels’ deliveries to seniors double as wellness check-ins, noted Kevin Ressler, who led the Meals on Wheels of Lancaster County before taking on his current role as United Way president and CEO.
Inability to maintain the routine activities of daily life, including eating and bathing, is an alarm bell, Everett said. Sometimes, the situation can be remedied by having a home care aide come in a few hours a day; if the patient is resistant, however, a move to a higher level of care may be the only option.
Emerging diagnostics, treatments
Since 2011, funding for dementia research has expanded nearly eight-fold, and it has borne fruit, Jacobs said. The association expects a diagnostic blood test to be available in the next 12 to 18 months, and a number of new treatments are in the pipeline.
Meanwhile, research continues into risk factors, including modifiable risk factors, Everett said. One suspect is micro-vascular disease, suggesting that controlling diabetes and cholesterol may contribute to maintaining brain health.
The panelists agreed that normalizing conversations around dementia and promoting cooperation among care providers, community organizations and other stakeholders is essential.
“The more we talk the more we learn,” Fisher said.
Alzheimer’s information & resources
Lancaster County resources
- Lancaster County Office of Aging
- Penn Medicine Lancaster General Health: Alzheimer’s, Memory Care & Dementia
- YMCA of the Roses: Alzheimer’s Association Community Education
- Meals on Wheels of Lancaster
- Lancaster Downtowners
- PA 211 East